HPS Network visits the Kotton Lab

The HPS Network visited the Kotton Lab in Framingham, Mass in July to learn more about how the lab is using stem cells derived from the blood of people with HPS to find clues to treat the lung disease of HPS. The lab collected blood samples at the HPS Conference two years ago. The Kotton Lab is known the world over for their stem cell work on a variety of lung diseases. While there, the visitors from the HPS Network learned more about induced pluripotent stem cells, the process to coax them to...

Team Brantner outreaches at genetics conference

The Brantner family manned an HPS Network booth at the Annual Clinical Genetics Meeting, April 1-2, 2019 in Seattle. They spoke with people working directly with patients in genetics departments across the country about HPS, how to test for HPS and the services offered by the HPS Network. Kylee Brantner stole the show at the booth as she expertly explained HPS to conference attendees and offered them cookies. (HPS booths typically feature cookies to illustrate the lack of delta dense bodies on...

Be a part of the Million Dollar Bike Ride!

Be a part of the Million Dollar Bike Ride! The HPS Network will have cyclists participating in the Million Dollar Bike Ride at Highline Park in Philadelphia on June 8th, 2019. The ride is hosted by the Penn Medicine Orphan Disease Center. Cyclists raise money to support their rare disease organizations. If you’d like to support our riders, you can donate at: https://www.hpsnetwork.org/million-dollar-bike-ride-2019/  Stay tuned for more information about our riders!

First annual HPS Awareness Day a great success!

The first annual HPS Awareness Day went above and beyond expectations on April 6th, 2019 as people impacted by HPS around the world took advantage of the day to host fundraisers as well as generate awareness through social media activism. Some fundraisers were online events through facebook or online t-shirt sales, but some were in-person events such as a pizza party, a movie night and a lemonade stand. The day was conceived by Kristen Brantner, a board member of the HPS Network as well as the...

Meeting of the Minds tackles HPS research questions

A record number of researchers attended the 5th Annual Meeting of the Minds scientific meeting, held March 9 – 10 at the HPS Network Conference. In all 46 physicians and scientists, all working on various aspects of research related to Hermansky-Pudlak Syndrome, gathered to share findings and plot future goals. “It was amazing to watch so many great minds together,” said Donna Appell, Executive Director and Founder of the HPS Network, “It is exciting how quickly this meeting has grown, and how...

HPS community wishes NHLBI a Happy 50th

Attendees at the 26th Annual HPS Network Conference, held in Uniondale NY in March, created a video to wish the National Heart, Lung and Blood Institute (NHLBI) at the National Institutes of Health a happy 50th anniversary. NHLBI was pleased with the video and plans to use it at various events throughout the year. If you wish to follow the NHLBI through its 50th anniversary year, follow the hashtag #lung50. If you’d like to see the video, go to: https://youtu.be/1C1wwPzdeYY On April 9th...